NY State Senate Bill 2021-S5927A

Archive: Last Bill Status - In Senate Committee Health Committee

Introduced
- In Committee Assembly
- In Committee Senate
- On Floor Calendar Assembly
- On Floor Calendar Senate
- Passed Assembly
- Passed Senate
Delivered to Governor
Signed By Governor

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Date of Action	Assembly Actions - Lowercase Senate Actions - UPPERCASE
Jan 05, 2022	referred to health
May 07, 2021	print number 5927a
May 07, 2021	amend and recommit to health
Mar 23, 2021	referred to health

Bill Amendments

Original

A (Active)

co-Sponsors

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2021-S5927 - Details

Current Committee:: Senate Health
Law Section:: Public Health Law
Laws Affected:: Add Art 21 Title 9 §§2185 - 2185-e, Pub Health L

2021-S5927 - Summary

Enacts the New York State COVID-19 Health Registry Act providing for the monitoring and tracking of the long-term health impacts of COVID-19 in New York state residents.

2021-S5927 - Sponsor Memo

                                
 
BILL NUMBER: S5927

SPONSOR: HOYLMAN
 
TITLE OF BILL:

An act to amend the public health law, in relation to enacting the New
York State COVID-19 Health Registry Act

 
PURPOSE:

To establish a New York State COVID-19 Health Registry within the New
York State Department of Health to track the long-term health impacts
and outcomes of volunteer enrollees who have been infected with COVID-19

 
SUMMARY OF PROVISIONS:

Section 1 of the bill amends article 21 of the Public Health Law

("Control of Communicable Diseases") to add a new title 9 entitled "New
York State COVID19 Health Registry." The new title 9 consists of the
following sections:

- Section 2185: Establishes the legislative findings and purpose of the
COVID19 Health Registry.

- Section 2185-a: Defines terms used in the new title 9.

- Section 2185-b: Authorizes and directs the New York State Department
of Health (DOH) to establish a voluntary statewide COVID-19 Health
Registry for the purpose of monitoring the long-term physical and mental
health impacts of COVID-19 infections; periodically surveying Registry
enrollees; sharing de-identified survey data or other Registry informa-
tion with researchers for the purpose of medical, public health or other
scientific research; and providing enrollees with information about
COVID-19-related health studies, programs, benefits and other relevant
information. Any enrollees data shared by the Registry with researchers
must comply with confidentiality requirements and be conditioned on the
free public accessibility of any resulting public studies, reports or
findings.

- Section 2185-c: Sets an initial enrollment period for the Registry
that begins 90 days after the effective date of the Act (for a total of
180 days after the Act is signed into law) and ends at a date to be
determined by the DOH Commissioner at least a year after the enrollment
period begins. The DOH Commissioner is directed to promulgate regu-
lations to establish eligibility for enrollment in the Registry, but at
a minimum it shall include New York residents who receive a diagnosis of
post-acute COVID-19 syndrome made by a New York-licensed health profes-
sional.

- Section 2185-d: Governs the confidentiality of enrollee information
and directs the DOH Commissioner to promulgate regulations establishing
permitted purposes and uses of Registry information. DOH would be
expressly prohibited from sharing any Registry information with immi-
gration authorities.

- Section 2185-e: Directs DOH to issue annual reports on the Registry,
with the first such report including strategies for implementation of
the Registry and promotion of the Registry to the general public, with a
particular focus on enrollees belonging to racial and ethnic groups that
have been disproportionately impacted by the COVID-19 pandemic. Subse-
quent annual reports shall include findings of any surveys conducted by
DOH of Registry enrollees, the findings of any scientific studies,
papers or reports produced using data or information collected in the
Registry, and recommendations for State action to address health issues
or trends identified by DOH.

Section 2 of the bill is the effective date.

 
JUSTIFICATION:

COVID-19 has had a devastating impact on the State of New York. Since
the first recorded death of a New York resident from the virus on March
14, 2020, tens of thousands of New Yorkers have lost their lives to
COVID-19, and over one and a half million confirmed cases have been
diagnosed.

The sudden emergence and rapid spread of COVID-19 around the world has
led to an evolving understanding of the transmissibility, virulence, and
symptoms of the virus by scientists and public health experts that
continues to this day. Questions remain as to why approximately 80% of
those infected with COVID-19 experience mild to no symptoms, while the
remainder experience a more severe response that can result in hospital-
ization or death, and weeks-long recoveries for those who survive.

There is also growing awareness and concern about post-acute COVID-19
syndrome, sometimes referred to as "long COVID," in which a small but
significant percentage of patients experience persistent symptoms weeks
or months after recovering from their initial infection.  It is vital
that the State of New York commit to monitoring and tracking the long-
term health impacts of COVID-19, even as effective vaccines become more
widely available. The establishment of a voluntary registry of New York-
ers who survived COVID-19 infection holds the promise of providing
public health experts with a database of information that may lead to a
better understanding of trends in long-term illness and recovery, and
the needs of survivors, particularly those suffering from post-acute
COVID-19 syndrome.

 
LEGISLATIVE HISTORY:

None, new bill.

 
FISCAL IMPLICATIONS:

To be determined.

 
EFFECTIVE DATE:
This act shall take effect on the ninetieth day after it shall have
become a law.

2021-S5927 - Bill Text download pdf

                            
 
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   5927
 
                        2021-2022 Regular Sessions
 
                             I N  S E N A T E
 
                              March 23, 2021
                                ___________
 
 Introduced  by  Sens.  HOYLMAN, RIVERA, BIAGGI, BRISPORT, BROUK, COMRIE,
   COONEY, HARCKHAM, HINCHEY, JACKSON, LIU, MANNION, MAY,  MAYER,  MYRIE,
   PERSAUD,  RAMOS,  REICHLIN-MELNICK, SALAZAR, SANDERS, STAVISKY -- read
   twice and ordered printed, and when printed to  be  committed  to  the
   Committee on Health

 AN  ACT  to amend the public health law, in relation to enacting the New
   York State COVID-19 Health Registry Act
 
   THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND  ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section  1. Article 21 of the public health law is amended by adding a
 new title 9 to read as follows:
                                  TITLE 9
                  NEW YORK STATE COVID-19 HEALTH REGISTRY
 SECTION 2185.   LEGISLATIVE FINDINGS AND PURPOSE.
         2185-A. DEFINITIONS.
         2185-B. NEW YORK STATE COVID-19 HEALTH REGISTRY.
         2185-C. ENROLLMENT AND ELIGIBILITY.
         2185-D. CONFIDENTIALITY.
         2185-E. ANNUAL REPORT.
   § 2185. LEGISLATIVE FINDINGS AND PURPOSE. 1.  THE  LEGISLATURE  HEREBY
 FINDS,  DETERMINES  AND  DECLARES  THAT  COVID-19  HAS HAD A DEVASTATING
 IMPACT ON THE STATE OF NEW YORK.  SINCE THE FIRST RECORDED  DEATH  OF  A
 NEW YORK RESIDENT FROM THE VIRUS ON MARCH FOURTEENTH, TWO THOUSAND TWEN-
 TY,  TENS OF THOUSANDS OF NEW YORKERS HAVE LOST THEIR LIVES TO COVID-19,
 AND OVER ONE AND A HALF MILLION CONFIRMED CASES HAVE BEEN  DIAGNOSED  AS
 OF  THE  EFFECTIVE DATE OF THIS ARTICLE.  THE SUDDEN EMERGENCE AND RAPID
 SPREAD OF COVID-19 AROUND THE WORLD HAS LED TO AN EVOLVING UNDERSTANDING
 OF THE TRANSMISSIBILITY, VIRULENCE, AND SYMPTOMS OF THE VIRUS BY  SCIEN-
 TISTS  AND  PUBLIC HEALTH EXPERTS THAT CONTINUES TO THIS DAY.  QUESTIONS
 REMAIN AS TO WHY APPROXIMATELY EIGHTY PERCENT  OF  THOSE  INFECTED  WITH
 COVID-19  EXPERIENCE MILD TO NO SYMPTOMS, WHILE THE REMAINDER EXPERIENCE
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.

                                                            LBD09897-01-1

 S. 5927                             2
 
 A MORE SEVERE RESPONSE THAT CAN RESULT IN HOSPITALIZATION OR DEATH,  AND
 WEEKS-LONG  RECOVERIES  FOR  THOSE  WHO  SURVIVE.  THERE IS ALSO GROWING
 AWARENESS AND CONCERN  ABOUT  POST-ACUTE  COVID-19  SYNDROME,  SOMETIMES
 REFERRED TO AS "LONG COVID," IN WHICH A SMALL BUT SIGNIFICANT PERCENTAGE
 OF  PATIENTS EXPERIENCE PERSISTENT SYMPTOMS WEEKS OR MONTHS AFTER RECOV-
 ERING FROM THEIR INITIAL INFECTION.
   IT IS VITAL THAT THE STATE OF NEW YORK COMMIT TO MONITORING AND TRACK-
 ING THE LONG-TERM HEALTH IMPACTS OF COVID-19, EVEN AS EFFECTIVE VACCINES
 BECOME MORE WIDELY AVAILABLE. THE ESTABLISHMENT OF A VOLUNTARY  REGISTRY
 OF  NEW  YORKERS  WHO  SURVIVED  COVID-19 INFECTION HOLDS THE PROMISE OF
 PROVIDING PUBLIC HEALTH EXPERTS WITH A DATABASE OF INFORMATION THAT  MAY
 LEAD TO A BETTER UNDERSTANDING OF TRENDS IN LONG-TERM ILLNESS AND RECOV-
 ERY, AND THE NEEDS OF SURVIVORS, PARTICULARLY THOSE SUFFERING FROM POST-
 ACUTE COVID-19 SYNDROME.
   § 2185-A. DEFINITIONS. AS USED IN THIS TITLE:
   1. "COVID-19" MEANS INFECTION WITH OR THE DISEASE CAUSED BY THE SEVERE
 ACUTE RESPIRATORY SYNDROME CORONAVIRUS 2 (SARS-COV-2);
   2.  "REGISTRY"  MEANS THE COVID-19 HEALTH REGISTRY ESTABLISHED BY THIS
 TITLE.
   § 2185-B. NEW YORK STATE COVID-19 HEALTH REGISTRY. THE  DEPARTMENT  IS
 HEREBY  AUTHORIZED  AND  DIRECTED  TO  ESTABLISH  A  VOLUNTARY STATEWIDE
 COVID-19 HEALTH REGISTRY FOR THE PURPOSE  OF  MONITORING  THE  LONG-TERM
 HEALTH  IMPACTS  OF  THE VIRUS.   THE REGISTRY SHALL SERVE, AND SHALL BE
 ADMINISTERED CONSISTENT WITH, THE FOLLOWING PUBLIC HEALTH PURPOSES:
   1. MONITORING THE LONG-TERM PHYSICAL  AND  MENTAL  HEALTH  IMPACTS  OF
 COVID-19  INFECTIONS, INCLUDING, BUT NOT LIMITED TO, POST-ACUTE COVID-19
 SYNDROME;
   2. PERIODICALLY SURVEYING REGISTRY ENROLLEES TO GATHER RELEVANT INFOR-
 MATION FOR THE PURPOSES OF MONITORING THE LONG-TERM PHYSICAL AND  MENTAL
 HEALTH IMPACTS OF COVID-19 INFECTIONS;
   3.  SHARING,  SUBJECT  TO  THE CONFIDENTIALITY REQUIREMENTS OF SECTION
 TWENTY-ONE HUNDRED EIGHTY-FIVE-D OF THIS TITLE AND ANY OTHER  APPLICABLE
 STATE OR FEDERAL LAWS OR REGULATIONS, DE-IDENTIFIED SURVEY DATA OR OTHER
 REGISTRY INFORMATION WITH RESEARCHERS FOR THE PURPOSE OF MEDICAL, PUBLIC
 HEALTH OR OTHER SCIENTIFIC RESEARCH. AS A CONDITION OF SHARING SUCH DATA
 OR  INFORMATION, ANY SUBSEQUENTLY PUBLISHED STUDIES, REPORTS OR FINDINGS
 THAT USED SUCH DATA OR INFORMATION SHALL BE MADE AVAILABLE AT NO  CHARGE
 TO THE PUBLIC ON THE DEPARTMENT'S WEBSITE; AND
   4.  PROVIDING ENROLLEES WITH INFORMATION ABOUT COVID-19-RELATED HEALTH
 STUDIES, PROGRAMS, BENEFITS, AND OTHER RELEVANT INFORMATION.
   § 2185-C. ENROLLMENT AND ELIGIBILITY. 1. THE INITIAL ENROLLMENT PERIOD
 FOR THE REGISTRY SHALL BEGIN NINETY DAYS AFTER  THE  EFFECTIVE  DATE  OF
 THIS  SECTION.  THE  COMMISSIONER  MAY SET A DATE UPON WHICH THE INITIAL
 ENROLLMENT PERIOD ENDS, BUT SUCH DATE SHALL NOT BE  PRIOR  TO  ONE  YEAR
 AFTER THE INITIAL ENROLLMENT PERIOD BEGINS.
   2.  THE  COMMISSIONER  MAY, AT HIS OR HER DISCRETION, ORDER ADDITIONAL
 ENROLLMENT PERIODS SUBSEQUENT TO THE INITIAL ENROLLMENT PERIOD, OF  SUCH
 LENGTHS AS HE OR SHE DETERMINES.
   3.  THE  COMMISSIONER SHALL PROMULGATE REGULATIONS TO ESTABLISH ELIGI-
 BILITY FOR ENROLLMENT IN THE REGISTRY. ELIGIBLE PARTICIPANTS SHALL, AT A
 MINIMUM, INCLUDE NEW YORK RESIDENTS WHO RECEIVE A DIAGNOSIS  OF  POST-A-
 CUTE  COVID-19 SYNDROME MADE BY AN INDIVIDUAL LICENSED TO PROVIDE HEALTH
 CARE SERVICES WITHIN THE STATE OF NEW YORK.
   § 2185-D. CONFIDENTIALITY. 1. ALL REGISTRY INFORMATION SHALL  BE  KEPT
 CONFIDENTIAL  BY  THE  DEPARTMENT  AND MAY NOT BE DISCLOSED EXCEPT FOR A
 PERMITTED PURPOSE.

 S. 5927                             3
 
   2. THE COMMISSIONER SHALL PROMULGATE REGULATIONS ESTABLISHING  PERMIT-
 TED PURPOSES AND USES OF REGISTRY INFORMATION.
   (A)  ALL  SUCH REGULATIONS SHALL MAINTAIN THE ANONYMITY OF INDIVIDUALS
 ENROLLED IN THE REGISTRY AND GOVERN ACCESS TO INFORMATION MAINTAINED  BY
 THE REGISTRY.
   (B)  IT  SHALL  NOT  BE  A PERMITTED PURPOSE FOR THE DEPARTMENT OR ANY
 AUTHORIZED USER OF THE REGISTRY TO PROVIDE INFORMATION CONTAINED IN  THE
 REGISTRY WITH IMMIGRATION AUTHORITIES.
   3. THE REGISTRY SHALL COMPLY WITH ALL STATE AND FEDERAL LAWS AND REGU-
 LATIONS  RELATED  TO  MAINTAINING  THE  PRIVACY  AND  CONFIDENTIALITY OF
 RECORDS CONTAINED WITH THE REGISTRY.
   § 2185-E. ANNUAL REPORT. THE COMMISSIONER SHALL SUBMIT  ON  OR  BEFORE
 DECEMBER  FIRST,  AN  ANNUAL  REPORT TO THE GOVERNOR AND THE LEGISLATURE
 CONCERNING THE OPERATION OF THE REGISTRY. THE FIRST SUCH REPORT REQUIRED
 UNDER THIS SECTION SHALL BE PUBLISHED ON DECEMBER FIRST OF THE  CALENDAR
 YEAR FOLLOWING THE COMMENCEMENT OF THE INITIAL ENROLLMENT PERIOD FOR THE
 REGISTRY,  AND SHALL INCLUDE STRATEGIES FOR IMPLEMENTATION OF THE REGIS-
 TRY AND FOR PROMOTING THE REGISTRY TO THE GENERAL PUBLIC, WITH A PARTIC-
 ULAR FOCUS ON ELIGIBLE ENROLLEES BELONGING TO RACIAL  OR  ETHNIC  GROUPS
 THAT  HAVE  BEEN  DISPROPORTIONATELY  IMPACTED BY THE COVID-19 PANDEMIC.
 SUBSEQUENT ANNUAL REPORTS SHALL INCLUDE  THE  FINDINGS  OF  ANY  SURVEYS
 CONDUCTED  BY  THE DEPARTMENT OF REGISTRY ENROLLEES, THE FINDINGS OF ANY
 SCIENTIFIC STUDIES, PAPERS, OR REPORTS PRODUCED USING DATA  OR  INFORMA-
 TION  COLLECTED IN THE REGISTRY, AND RECOMMENDATIONS FOR STATE ACTION TO
 ADDRESS HEALTH ISSUES OR TRENDS IDENTIFIED BY THE DEPARTMENT.
   § 2. This act shall take effect on the ninetieth day  after  it  shall
 have become a law.

co-Sponsors

View additional co-sponsors

2021-S5927A (ACTIVE) - Details

Current Committee:: Senate Health
Law Section:: Public Health Law
Laws Affected:: Add Art 21 Title 9 §§2185 - 2185-e, Pub Health L

2021-S5927A (ACTIVE) - Summary

Enacts the New York State COVID-19 Health Registry Act providing for the monitoring and tracking of the long-term health impacts of COVID-19 in New York state residents.

2021-S5927A (ACTIVE) - Sponsor Memo

                                
 
BILL NUMBER: S5927A

SPONSOR: HOYLMAN
 
TITLE OF BILL:

An act to amend the public health law, in relation to enacting the New
York State COVID-19 Health Registry Act

 
PURPOSE:

To establish a New York State COVID-19 Health Registry within the New
York State Department of Health to track the long-term health impacts
and outcomes of volunteer enrollees who have been infected with COVID-19

 
SUMMARY OF PROVISIONS:

Section 1 of the bill amends article 21 of the Public Health Law
("Control of Communicable Diseases") to add a new title 9 entitled "New
York State COVID19 Health Registry." The new title 9 consists of the
following sections:

-Section 2185: Establishes the legislative findings and purpose of the
COVID19 Health Registry.

-Section 2185-a: Defines terms used in the new title 9.

-Section 2185-b: Authorizes and directs the New York State Department of
Health (DOH) to establish a voluntary statewide COVID-19 Health Registry
for the purpose of monitoring the long-term physical and mental health
impacts of COVID-19 infections; periodically surveying Registry enrol-
lees; sharing de-identified survey data or other Registry information
with researchers for the purpose of medical, public health or other
scientific research; and providing enrollees with information about
COVID-19-related health studies, programs, benefits and other relevant
information. Any enrollees data shared by the Registry with researchers
must comply with confidentiality requirements and be conditioned on the
free public accessibility of any resulting public studies, reports or
findings.

-Section 2185-c: Sets an initial enrollment period for the Registry that
begins 90 days after the effective date of the Act (for a total of 180
days after the Act is signed into law) and ends at a date to be deter-
mined by the DOH Commissioner at least a year after the enrollment peri-
od begins. The DOH Commissioner is directed to promulgate regulations to
establish eligibility for enrollment in the Registry, but at a minimum
it shall include New York residents who receive a diagnosis of post-CO-
VID conditions made by a New York-licensed health professional.

-Section 2185-d: Governs the confidentiality of enrollee information and
directs the DOH Commissioner to promulgate regulations establishing
permitted purposes and uses of Registry information. DOH would be
expressly prohibited from sharing any Registry information with immi-
gration authorities.

-Section 2185-e: Directs DOH to issue annual reports on the Registry,
with the first such report including strategies for implementation of
the Registry and promotion of the Registry to the general public, with a
particular focus on enrollees belonging to racial and ethnic groups that
have been disproportionately impacted by the COVID-19 pandemic. Subse-
quent annual reports shall include findings of any surveys conducted by
DOH of Registry enrollees, the findings of any scientific studies,
papers or reports produced using data or information collected in the
Registry, and recommendations for State action to address health issues
or trends identified by DOH.

Section 2 of the bill is the effective date.

 
JUSTIFICATION:

COVID-19 has had a devastating impact on the State of New York. Since
the first recorded death of a New York resident from the virus on March
14, 2020, tens of thousands of New Yorkers have lost their lives to
COVID-19, and over one and a half million confirmed cases have been
diagnosed.

The sudden emergence and rapid spread of COVID-19 around the world has
led to an evolving understanding of the transmissibility, virulence, and
symptoms of the virus by scientists and public health experts that
continues to this day. Questions remain as to why approximately 80% of
those infected with COVID-19 experience mild to no symptoms, while the
remainder experience a more severe response that can result in hospital-
ization or death, and weeks-long recoveries for those who survive.

There is also growing awareness and concern about post-COVID conditions,
sometimes referred to as "long COVID," in which a small but significant
percentage of patients experience persistent symptoms weeks or months
after recovering from their initial infection.

It is vital that the State of New York commit to monitoring and tracking
the long-term health impacts of COVID-19, even as effective vaccines
become more widely available. The establishment of a voluntary registry
of New Yorkers who survived COVID-19 infection holds the promise of
providing public health experts with a database of information that may
lead to a better understanding of trends in long-term illness and recov-
ery, and the needs of survivors, particularly those suffering from
post-COVID conditions.

 
LEGISLATIVE HISTORY:

None, new bill.

 
FISCAL IMPLICATIONS:

To be determined.

 
EFFECTIVE DATE:
This act shall take effect on the ninetieth day after it shall have
become a law.

2021-S5927A (ACTIVE) - Bill Text download pdf

                            
 
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                  5927--A
 
                        2021-2022 Regular Sessions
 
                             I N  S E N A T E
 
                              March 23, 2021
                                ___________
 
 Introduced  by  Sens.  HOYLMAN, RIVERA, BIAGGI, BRISPORT, BROUK, COMRIE,
   COONEY, HARCKHAM,  HINCHEY,  JACKSON,  KAVANAGH,  LIU,  MANNION,  MAY,
   MAYER,  MYRIE,  PERSAUD,  RAMOS,  REICHLIN-MELNICK,  SALAZAR, SANDERS,
   SERRANO, STAVISKY -- read twice and ordered printed, and when  printed
   to  be  committed  to the Committee on Health -- committee discharged,
   bill amended, ordered reprinted as amended  and  recommitted  to  said
   committee
 
 AN  ACT  to amend the public health law, in relation to enacting the New
   York State COVID-19 Health Registry Act
 
   THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND  ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section  1. Article 21 of the public health law is amended by adding a
 new title 9 to read as follows:
                                  TITLE 9
                  NEW YORK STATE COVID-19 HEALTH REGISTRY
 SECTION 2185.   LEGISLATIVE FINDINGS AND PURPOSE.
         2185-A. DEFINITIONS.
         2185-B. NEW YORK STATE COVID-19 HEALTH REGISTRY.
         2185-C. ENROLLMENT AND ELIGIBILITY.
         2185-D. CONFIDENTIALITY.
         2185-E. ANNUAL REPORT.
   § 2185. LEGISLATIVE FINDINGS AND PURPOSE. 1.  THE  LEGISLATURE  HEREBY
 FINDS,  DETERMINES  AND  DECLARES  THAT  COVID-19  HAS HAD A DEVASTATING
 IMPACT ON THE STATE OF NEW YORK.  SINCE THE FIRST RECORDED  DEATH  OF  A
 NEW YORK RESIDENT FROM THE VIRUS ON MARCH FOURTEENTH, TWO THOUSAND TWEN-
 TY,  TENS OF THOUSANDS OF NEW YORKERS HAVE LOST THEIR LIVES TO COVID-19,
 AND OVER ONE AND A HALF MILLION CONFIRMED CASES HAVE BEEN  DIAGNOSED  AS
 OF  THE  EFFECTIVE DATE OF THIS ARTICLE.  THE SUDDEN EMERGENCE AND RAPID
 SPREAD OF COVID-19 AROUND THE WORLD HAS LED TO AN EVOLVING UNDERSTANDING
 OF THE TRANSMISSIBILITY, VIRULENCE, AND SYMPTOMS OF THE VIRUS BY  SCIEN-
 TISTS  AND  PUBLIC HEALTH EXPERTS THAT CONTINUES TO THIS DAY.  QUESTIONS
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.

                                                            LBD09897-02-1

 S. 5927--A                          2
 
 REMAIN AS TO WHY APPROXIMATELY EIGHTY PERCENT  OF  THOSE  INFECTED  WITH
 COVID-19  EXPERIENCE MILD TO NO SYMPTOMS, WHILE THE REMAINDER EXPERIENCE
 A MORE SEVERE RESPONSE THAT CAN RESULT IN HOSPITALIZATION OR DEATH,  AND
 WEEKS-LONG  RECOVERIES  FOR  THOSE  WHO  SURVIVE.  THERE IS ALSO GROWING
 AWARENESS AND CONCERN ABOUT POST-COVID CONDITIONS, SOMETIMES REFERRED TO
 AS "LONG COVID," IN WHICH A SMALL BUT SIGNIFICANT PERCENTAGE OF PATIENTS
 EXPERIENCE PERSISTENT SYMPTOMS WEEKS OR  MONTHS  AFTER  RECOVERING  FROM
 THEIR INITIAL INFECTION.
   IT IS VITAL THAT THE STATE OF NEW YORK COMMIT TO MONITORING AND TRACK-
 ING THE LONG-TERM HEALTH IMPACTS OF COVID-19, EVEN AS EFFECTIVE VACCINES
 BECOME  MORE WIDELY AVAILABLE. THE ESTABLISHMENT OF A VOLUNTARY REGISTRY
 OF NEW YORKERS WHO SURVIVED COVID-19  INFECTION  HOLDS  THE  PROMISE  OF
 PROVIDING  PUBLIC HEALTH EXPERTS WITH A DATABASE OF INFORMATION THAT MAY
 LEAD TO A BETTER UNDERSTANDING OF TRENDS IN LONG-TERM ILLNESS AND RECOV-
 ERY, AND THE NEEDS  OF  SURVIVORS,  PARTICULARLY  THOSE  SUFFERING  FROM
 POST-COVID CONDITIONS.
   § 2185-A. DEFINITIONS. AS USED IN THIS TITLE:
   1. "COVID-19" MEANS INFECTION WITH OR THE DISEASE CAUSED BY THE SEVERE
 ACUTE RESPIRATORY SYNDROME CORONAVIRUS 2 (SARS-COV-2);
   2.  "REGISTRY"  MEANS THE COVID-19 HEALTH REGISTRY ESTABLISHED BY THIS
 TITLE.
   § 2185-B. NEW YORK STATE COVID-19 HEALTH REGISTRY. THE  DEPARTMENT  IS
 HEREBY  AUTHORIZED  AND  DIRECTED  TO  ESTABLISH  A  VOLUNTARY STATEWIDE
 COVID-19 HEALTH REGISTRY FOR THE PURPOSE  OF  MONITORING  THE  LONG-TERM
 HEALTH  IMPACTS  OF  THE VIRUS.   THE REGISTRY SHALL SERVE, AND SHALL BE
 ADMINISTERED CONSISTENT WITH, THE FOLLOWING PUBLIC HEALTH PURPOSES:
   1. MONITORING THE LONG-TERM PHYSICAL  AND  MENTAL  HEALTH  IMPACTS  OF
 COVID-19  INFECTIONS,  INCLUDING,  BUT NOT LIMITED TO, POST-COVID CONDI-
 TIONS;
   2. PERIODICALLY SURVEYING REGISTRY ENROLLEES TO GATHER RELEVANT INFOR-
 MATION FOR THE PURPOSES OF MONITORING THE LONG-TERM PHYSICAL AND  MENTAL
 HEALTH IMPACTS OF COVID-19 INFECTIONS;
   3.  SHARING,  SUBJECT  TO  THE CONFIDENTIALITY REQUIREMENTS OF SECTION
 TWENTY-ONE HUNDRED EIGHTY-FIVE-D OF THIS TITLE AND ANY OTHER  APPLICABLE
 STATE OR FEDERAL LAWS OR REGULATIONS, DE-IDENTIFIED SURVEY DATA OR OTHER
 REGISTRY INFORMATION WITH RESEARCHERS FOR THE PURPOSE OF MEDICAL, PUBLIC
 HEALTH OR OTHER SCIENTIFIC RESEARCH. AS A CONDITION OF SHARING SUCH DATA
 OR  INFORMATION, ANY SUBSEQUENTLY PUBLISHED STUDIES, REPORTS OR FINDINGS
 THAT USED SUCH DATA OR INFORMATION SHALL BE MADE AVAILABLE AT NO  CHARGE
 TO THE PUBLIC ON THE DEPARTMENT'S WEBSITE; AND
   4.  PROVIDING ENROLLEES WITH INFORMATION ABOUT COVID-19-RELATED HEALTH
 STUDIES, PROGRAMS, BENEFITS, AND OTHER RELEVANT INFORMATION.
   § 2185-C. ENROLLMENT AND ELIGIBILITY. 1. THE INITIAL ENROLLMENT PERIOD
 FOR THE REGISTRY SHALL BEGIN NINETY DAYS AFTER  THE  EFFECTIVE  DATE  OF
 THIS  SECTION.  THE  COMMISSIONER  MAY SET A DATE UPON WHICH THE INITIAL
 ENROLLMENT PERIOD ENDS, BUT SUCH DATE SHALL NOT BE  PRIOR  TO  ONE  YEAR
 AFTER THE INITIAL ENROLLMENT PERIOD BEGINS.
   2.  THE  COMMISSIONER  MAY, AT HIS OR HER DISCRETION, ORDER ADDITIONAL
 ENROLLMENT PERIODS SUBSEQUENT TO THE INITIAL ENROLLMENT PERIOD, OF  SUCH
 LENGTHS AS HE OR SHE DETERMINES.
   3.  THE  COMMISSIONER SHALL PROMULGATE REGULATIONS TO ESTABLISH ELIGI-
 BILITY FOR ENROLLMENT IN THE REGISTRY. ELIGIBLE PARTICIPANTS SHALL, AT A
 MINIMUM, INCLUDE NEW YORK RESIDENTS WHO RECEIVE A DIAGNOSIS OF  POST-CO-
 VID  CONDITIONS  MADE  BY  AN INDIVIDUAL LICENSED TO PROVIDE HEALTH CARE
 SERVICES WITHIN THE STATE OF NEW YORK.

 S. 5927--A                          3
 
   § 2185-D. CONFIDENTIALITY. 1. ALL REGISTRY INFORMATION SHALL  BE  KEPT
 CONFIDENTIAL  BY  THE  DEPARTMENT  AND MAY NOT BE DISCLOSED EXCEPT FOR A
 PERMITTED PURPOSE.
   2.  THE COMMISSIONER SHALL PROMULGATE REGULATIONS ESTABLISHING PERMIT-
 TED PURPOSES AND USES OF REGISTRY INFORMATION.
   (A) ALL SUCH REGULATIONS SHALL MAINTAIN THE ANONYMITY  OF  INDIVIDUALS
 ENROLLED  IN THE REGISTRY AND GOVERN ACCESS TO INFORMATION MAINTAINED BY
 THE REGISTRY.
   (B) IT SHALL NOT BE A PERMITTED PURPOSE  FOR  THE  DEPARTMENT  OR  ANY
 AUTHORIZED  USER OF THE REGISTRY TO PROVIDE INFORMATION CONTAINED IN THE
 REGISTRY WITH IMMIGRATION AUTHORITIES.
   3. THE REGISTRY SHALL COMPLY WITH ALL STATE AND FEDERAL LAWS AND REGU-
 LATIONS RELATED  TO  MAINTAINING  THE  PRIVACY  AND  CONFIDENTIALITY  OF
 RECORDS CONTAINED WITH THE REGISTRY.
   §  2185-E.  ANNUAL  REPORT. THE COMMISSIONER SHALL SUBMIT ON OR BEFORE
 DECEMBER FIRST, AN ANNUAL REPORT TO THE  GOVERNOR  AND  THE  LEGISLATURE
 CONCERNING THE OPERATION OF THE REGISTRY. THE FIRST SUCH REPORT REQUIRED
 UNDER  THIS SECTION SHALL BE PUBLISHED ON DECEMBER FIRST OF THE CALENDAR
 YEAR FOLLOWING THE COMMENCEMENT OF THE INITIAL ENROLLMENT PERIOD FOR THE
 REGISTRY, AND SHALL INCLUDE STRATEGIES FOR IMPLEMENTATION OF THE  REGIS-
 TRY AND FOR PROMOTING THE REGISTRY TO THE GENERAL PUBLIC, WITH A PARTIC-
 ULAR  FOCUS  ON  ELIGIBLE ENROLLEES BELONGING TO RACIAL OR ETHNIC GROUPS
 THAT HAVE BEEN DISPROPORTIONATELY IMPACTED  BY  THE  COVID-19  PANDEMIC.
 SUBSEQUENT  ANNUAL  REPORTS  SHALL  INCLUDE  THE FINDINGS OF ANY SURVEYS
 CONDUCTED BY THE DEPARTMENT OF REGISTRY ENROLLEES, THE FINDINGS  OF  ANY
 SCIENTIFIC  STUDIES,  PAPERS, OR REPORTS PRODUCED USING DATA OR INFORMA-
 TION COLLECTED IN THE REGISTRY, AND RECOMMENDATIONS FOR STATE ACTION  TO
 ADDRESS HEALTH ISSUES OR TRENDS IDENTIFIED BY THE DEPARTMENT.
   §  2.  This  act shall take effect on the ninetieth day after it shall
 have become a law.

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Archive: Last Bill Status - In Senate Committee Health Committee

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